Nexavir (Kutapressin) for CFS

During the 1940s, a product called Kutapressin was licensed to treat acne, cold sores, herpes viruses and other inflammatory viruses. In 1983, Kutapressin was trialled on ME/CFS patients. A company called Schwarz Pharma produced Kutapressin until several years ago when this product was discontinued. A separate company called Nexco Pharma recently reintroduced this same product with a virtually identical composition to Kutapressin under the brand name ‘Nexavir.’ The terms Kutapressin and Nexavir will be used interchangeably in this article.

Nexavir is a porcine liver extract that is the residual product from the process of vitamin B12 extraction. It is composed of peptides and amino acids.

Nexavir Studies

Nexavir has been around for almost 70 years however few studies have been performed on it. I will examine the Nexavir studies relevant to ME/CFS. The first such study was a 1996 study titled ‘Potential in vitro activity of Kutapressin against Epstein-Barr virus.’ The abstract of this study can be found here: http://www.ncbi.nlm.nih.gov/pubmed/8797033 This study determined that Kutapressin can inhibit Epstein-Barr virus in vitro.

The second study to assess the efficacy of Kutapressin was published in 1994 and titled ‘Antiviral activity in vitro of Kutapressin against human herpesvirus-6.’ The abstract of this study can be found here: http://www.ncbi.nlm.nih.gov/pubmed/7893985 This study concluded that Kutapressin has potent and previously unexpected antiviral effects. HHV-6 replication was inhibited in vitro by greater than 90%.

A study was published in the 1990 spring CFIDS Chronicle titled ‘The Treatment of CFIDS with Kutapressin.’ This study can be found here: http://www.me-cvs.nl/index.php?pageid=3423&printlink=true&highlight=cfs This study was not peer reviewed and didn’t contain a control group or placebo treatment. Inclusion in this study required patients to fulfil the Holmes et al. criteria with symptoms present for at least four months. Many secondary tests were performed on this cohort to exclude CFS-related conditions. A large portion of those included in this study (59%) had abnormal EBV-EA IgG titer levels. 80% of this study cohort had CFS for greater than 1 year while 18% of the cohort had CFS for a duration exceeding 6 years.

2ml of Kutapressin was administered daily for ten days followed by three times a week. Out of the 270 study participants, 96% of those receiving more than 40 injections reached remission or near remission status (with few residual symptoms.) 71% of patients receiving 11-40 injections reached remission or near remission status (with few residual symptoms.) This positive correlation of number of injections to treatment efficacy was realised post hoc by the study authors hence not all participants had more than 40 injections. High EBV-EA IgG titer levels were the main biomarker indicating a success of Kutapressin treatment, although patients with normal EBV-EA IgG levels also improved with Kutapressin.

The final study that I will examine is titled ‘Subjective Reduction in Symptoms of Chronic Fatigue Syndrome Following Long-Term Treatment with a Porcine Liver Extract: A Phase 1 Trial.’ Some details of this study can be found here: http://www.ncf-net.org/library/kutreat.html This 1994 study was led by the same two study authors as the previously mentioned 1990 study. Consequentially, the same Holmes criteria were used to select participants and a greater than four months CFS duration was a prerequisite for patient inclusion. There was no control group or placebo treatment in this study. The 130 CFS patients in this study were administered 2ml injections of Kutapressin daily for 25 days, then every second day for 50 days followed by three times a week for 105 days. In total, the participants had 95 injections over a period of 180 days. Of the 180 CFS patients, following Kutapressin treatment 43% reached remission status while 42% reached near remission status (with few residual symptoms.) The authors concluded that Kutapressin subjectively decreased the clinical symptoms of the majority of CFS patients.

Nexavir’s Possible Mechanisms of Action on ME/CFS Patients

Nexavir may improve ME/CFS symptoms because it:

Inhibits EBV

Inhibit HHV-6

Is anti-inflammatory

Is antiviral

Is an immunomodulator (Nexavir may help shift the immune system away from Th2 dominance.)

Enhances blood flow in the brain (as measured by a SPECT scan.) This increased rate of blood flow may be a consequence of the Bradykinin effect which involves dilation of the blood vessels.

Side Effects

Nexavir has been used to treat a variety of conditions for almost 70 years and is widely regarded as safe. Some physicians that are reluctant to prescribe antivirals such as Valtrex and Famvir due to possible side effects instead prescribe Nexavir as a safer alternative.

The 1990 study titled ‘The Treatment of CFIDS with Kutapressin’ contained 270 CFS patients and involved the administration of 8,900 injections of Kutapressin. This study only noted one adverse reaction to Kutapressin in which the patient believed that they had new symptoms and observed a deterioration of functioning immediately following injections.

The 1994 study titled ‘Subjective Reduction in Symptoms of Chronic Fatigue Syndrome Following Long-Term Treatment with a Porcine Liver Extract: A Phase 1 Trial’ also examined the side effects of Kutapressin injections. Out of the 130 CFS patients, only 21 had minor side effects. Out of the 21 patients experiencing mild side effects, 16 reached a remission or near remission of their CFS.

Nexavir is contraindicated in those with an intolerance or hypersensitivity to liver or pork products. Nexavir contains tyramine and therefore cannot be used by patients taking MAO inhibitors. The tyramine may also cause migraines in a small portion of patients. Nexavir also contains phenol which may cause an allergic reaction in some users. Like with all injections; rashes, swelling, pain and stinging may occur at the injection site. Anecdotal reports online indicate that many users of Nexavir experience bruising at the injection site and therefore must vary the specific injection location.

ME/CFS specialists’ opinions on Nexavir

I will now present what an eclectic range of ME/CFS specialists’ thoughts are regarding Nexavir as an ME/CFS treatment. I have attempted to gather the most up-to-date viewpoints of these specialists however due to the perpetually evolving nature of ME/CFS treatments, some of these opinions may now be outdated.

Dr. De Meirleir

Dr. De Meirleir performed a study involving the administration of Nexavir or a placebo to ME/CFS patients. 63% of those ME/CFS patients in the treatment group responded to Nexavir while only 17% of those ME/CFS patients in the placebo group responded. Dr. De Meirleir finds that approximately 50% of his patients are pain free after 2-3 months of Nexavir injections. His patients generally experience a normalisation of sleep within 3 days of commencing Nexavir. Approximately 70% of Dr. De Meirleir’s patients experience a 20+ point increase (based on the Karnovsky scale) as a consequence of taking Nexavir

Dr. Cheney

Dr Cheney formerly recommended Kutapressin as a treatment for ME/CFS. He stated that it is analogous to a weaker form of Ampligen. In the past Dr Cheney used Kutapressin/Nexavir injections however at some staged preferred using the gel form of Nexavir. He has also stated that his patients generally experience a 20-80% improvement as a consequence of taking Nexavir gel and secondary treatments. ‘ECHO terrain maps’ now mainly influence Dr Cheney’s ME/CFS protocol and he has consequentially stopped prescribing Nexavir. He now uses his own mix of five cell signalling factors instead of Nexavir. These are; porcine brain, bison liver, bison heart, bison kidney and bison pancreas.

Dr. Enlander

Dr. Enlander used Kutapressin for approximately 12 years until Schwarz Pharma ceased producing it. He then originally tried Nexavir on his patients however due to the preservatives within Nexavir, he trialled his patients on Hepapressin. Hepapressin is similar to Nexavir however it is an Argentinean bovine liver extract, as opposed to porcine liver extract. Dr. Enlander recommends that his patients take other substances in tandem with Hepapressin to increase its effectiveness. 67% of his patients have shown an improvement as a consequence of weekly Hepapressin injections in combination with other treatments. Recently, Dr. Enlander commenced a study alongside Dr. De Meirleir that examined alternative ways to administer Nexavir/Hepapressin.

Dr Teitelbaum

Dr. Teitelbaum has noticed a dramatic improvement in some of his CFS patients as a consequence of taking Nexavir regularly. He has found that those patients who took Nexavir three times a week didn’t gain much benefit as daily injections are a ﻿necessity. Dr. Teitelbaum has also observed that some of his patients’ CFS symptoms returned after discontinuing Nexavir.

Dr. Lapp

Dr. Lapp provided almost every ME/CFS patient that made an appointment with him, the opportunity to try Kutapressin. He has labelled it as a “wonderful alternative.” Dr. Lapp has stated that Nexavir was handmade for CFS patients with the main arguments against taking it being the cost and the necessary frequency of the ‘painful’ injections.

Combining Nexavir with Other Treatments

Many specialists combine Nexavir with other treatments to either increase the efficacy of Nexavir itself or through the means of multiple treatments increasing the chances of a successful treatment.

Dr. De Meirleir often uses Nexavir in combination with vitamin B12 injections. He recommends 10mgs of B12 (either methylcobalamin or hydroxocobalamin) be administered twice a week.

Some anecdotal reports indicate that combining Nexavir with other, more traditional prescription antivirals may increase the efficacy of Nexavir or one of the other antivirals.

How to take Nexavir?

Nexavir is to be administered by either subcutaneous or intramuscular injection. Different ME/CFS specialists have various protocols regarding dosage and frequency of Nexavir injection however the most commonly recommended dosage is 2ml administered daily. Some patients may experience a herxheimer type reaction on a 2ml starting dose hence it may be wise to work up to a 2ml dose. Dr Cheney (when he prescribed Nexavir) recommended that the dose be varied between 1 and 4 cc a day. Nexavir should be taken for at least 6 months to determine whether it may be an effective treatment.

Other Details

A prescription is required to purchase the injectable form of Nexavir. The only company that manufactures Nexavir is a Texan company called Nexco Pharma. A Texas pharmacy called Village Compounding produces Nexavir compounded as a transdermal gel. A prescription is also required for this Nexavir gel. ﻿﻿﻿Nexavir should not be confused with ‘Nexavar,’ a drug that treats certain cancers.

Negatives of taking Nexavir

The main negative of taking Nexavir is the cost. At 2ml a day (the standard dose), Nexavir will cost approximately US$450 a month. As the minimum recommended treatment period of Nexavir is 6 months (barring side effects), the total cost of a Nexavir trial is approximately US $2,700. This is not including the cost of shipping, syringes or needles. ﻿Some insurance companies may partially cover the cost of Nexavir.

Another negative of taking Nexavir involves the cumbersome daily injections. These have been described by some Nexavir uses as “painful.” The final potential negative of using Nexavir as an ME/CFS treatment involves the possible side effects (mentioned in an earlier section.) While the likelihood of experiencing these side effects seems to be minimal, the possibility exists.

My Nexavir Protocol

I will begin Nexavir injections in the coming week. I will start at a 2ml daily dose and keep this dose static for 1-2 months. Depending on whether Nexavir has any effect on my ME/CFS symptoms, I may then begin to pulse the Nexavir dose. I may also attempt to combine Nexavir with other treatments to increase its efficacy. I will update this blog to detail any effects Nexavir has on my illness.

Conclusion

Nexavir/Kutapressin boast some of the most successful study results of CFS treatments. Although the heterogeneity of CFS makes transposing CFS study results often problematic. The efficacy of Nexavir in tandem with the low possibility of side effects makes Nexavir (or one of its related derivatives) one of the primary ME/CFS treatments utilised by a multitude of specialists.

Great article as usual.
Is nexavir something you will have to take for the rest of your life?
My doctor advised me to take it, but I have postponed my decision due to the cost of all the tests, the cost of other meds and supplements, some other expenses, the rollercoaster I am on switching between antibiotics and probiotics, and the lack of results as reported by patients in forums. Looking forward to your updates.
In EU it cost €150 for 20 ml. A one month supply incl. shipping will cost €473 in Belgium, approximately US $660.

@Renate: Thanks for the information about Dr. De Meirleir. I got my information about him using subcutaneous B12 injections from a secondary source here: http://www.prohealth.com/library/showarticle.cfm?libid=13306 This was based on his talk in Australia in 2007. I have changed this part of the article to not specify the type of B12 injections he recommends. Thanks again.

@Johan: “Is nexavir something you will have to take for the rest of your life?” This is a good question, the studies didn’t examine whether Nexavir would have to be continued to maintain its efficacy. Follow up questionnaires aimed at the study cohorts would have been useful to clarify whether Nexavir was a temporary fix or a permanent panacea for the patients that reached remission status. Based on the specialists’ accounts that I have read I believe that some patients are able to stop taking Nexavir and their improved condition is maintained. After ceasing Nexavir injections, other patients may experience a worsening of their symptoms to a possibly ‘pre-Nexavir’ severity. This indicates that the Nexavir is only masking the underlying problem. Although this is purely my own speculation, this ‘effects of stopping Nexavir dichotomy’ may be influenced by the type of ME/CFS, e.g. if the patient improved due to a lowering of their EBV-EA IgG titer levels, the patient may not gain anything from continuing Nexavir. Personally, I will take Nexavir for 6 months and at this stage I will reassess the situation based on its effects on me. If it hasn’t improved my condition, I will most likely stop taking it. If it does improve my condition, I may experiment and go for a period without taking Nexavir to determine if I need to take it indefinitely to experience a possibly ‘pseudo-improvement.’

It is interesting to hear of the cost of obtaining Nexavir in Belgium. The differing cost estimates of Nexavir somewhat perplex me. Even when the shipping costs are factored in, there is still quite a significant price range discrepancy amongst Nexavir orders.

The high cost of Nexavir was the equal main deterrence to stop me trying Nexavir, along with finding a doctor to prescribe it! Some insurance companies partially cover the cost of Nexavir which will bring the cost down for some users.

Interesting article, and thanks for the extensive research you did to complete this…

Unfortunately, for me I think I’ll have to pass.

#1) with OI/POTS “effect which involves dilation of the blood vessels.” is the Exact Opposite of what we NEED. That was also the reason I use to drink coffee/coke to get the caffeine to help constrict the blood vessels to help prevent migraines.

#2) I already take 10-14mgs of B-12 daily and my L-Lysine 4,000mg Daily is keeping anything in the Herpes Family of viruses dormant.

#3) I have already purchased the Hawthorne and am taking that occasionally.

#4) with OI/POTS I am unable to get to the Dr’s office let alone talk him into this
( I would have to Educate him First) and
not having any medical coverage I don’t need the extra expense..

#5) I’ll just wait for my XMRV test results to come back….

I DO hope that this might help those w/o OI/POTS as long as they have …

RE: Dr. Teitelbaum comment:
“He has found that those patients who took Nexavir three times a week didn’t gain much benefit.”
Can you put this in context at all e.g. was it in the context of him saying patients should take it more or less frequently? (I’m guess the former)

But if a patient has XMRV, any drug aimed at keeping viruses in check or improving immune function probably ARE for life, not because you become dependent or because it is masking something else, but because XMRV will never go away. AIDS patients will never be entirely free of drugs, either. Better combinations may come along, but they will always have to take something to bolster their immune system and keep their viral load low.

We found this to be true of HHV-6, Variant A, as well – it could be suppressed, but never entirely defeated.

However, if you do not want the cumulative effects of multiple opportunistic infections on your system, and you can find a way to afford a drug that reduces them, I think that’s our fate.

I have used Nexavir off and on back in the days when it was still Kutapressin, and I think it was helpful.

I first began treament with Kutapressin in 1988, after being ill for over a year. At that time, I was given 2 ml., 3x week, and wasn’t sure whether it was very helpful.

I went on and off the drug, but found it most helpful when used 2 ml/day IM and was particularly useful in heading off post-exertional malaise if I gave myself an injection in time.

For the past 5 years, I’ve been much more ill. I live in Canada now, and wish I could afford to purchase Nexavir again, because I think it would help; iut wouldn’t get me well, but it would definitely make me better.

I was on Valcyte for almost 2 years (2007-2009). Initially it looked like it was helping, but it didn’t last.

Thank you for pulling all the info together in one spot. I have read almost all of it prior.

I was in the 1994 Kutapression Trials, actually I don’ think I was part of a trial becuse my doctor wasn’t told to take tests along the way and I am in Canada they don’t have them here or didt; most of them still not in 2004. I was on it for 6 months, by the 2nd month I really started to notice a difference, by 6 months, I was not cured but it wasn’t like the living dead and surviving, I was able to get out a bit more freuently and my “crashes” didn’t come as fast or as severe, unless I really pushed it a few time. It was far enough to return to work, and I couldn’ afford to stay on them and no it didn’t last, wore off within 2 years, although Ihad help with that, that’s another story. Another alleged ME/CFS doctor later wouldn’t do the paper work to order them up in 2004, he only knew some of the symptoms, not the viruses, treatements or the ANS dergulation, tthey just pushed pills

typing very hard right now excuse typos, I always watch othrer forums for this and ampleigen etc, and Nexavir I ahve repeatedly seen is a gerneric form of kutapression (not as good quality or as strong) and many that took kupression prior, have to increasing their dosing, and not pulse as much.

Still I would go back on it in a heart beat. I have neural mediation hyptersion. all I can say is that I had improvement all way round, Istill couldn’t stand very long in one page, my cognitive improved as well

@Johan: Thanks for the interest. I haven’t experienced any symptomatic improvements since commencing the Nexavir treatment. I have used Immunoprop as an adjunctive therapy for the past month and a half and I will soon be beginning Hawthorn leaf and flower alongside the Nexavir. Although it is most likely a spurious similarity, my condition has deteriorate over the past month. I now struggle to watch TV or use the computer for greater than 20 minutes at a time. On many days I have been unable to watch TV or use the computer at all. I will continue the Nexavir and I may experiment with pulsing the dose and other adjunctive therapies imminently.

Hi
Thank you for this great summary! Do you have a link to Prof. De Meirleirs publication refering “63% of those ME/CFS patients in the treatment group responded to Nexavir while only 17% of those ME/CFS patients in the placebo group responded”
Thank you in advance!
Kind regards
Rutt

@rivka: Thanks for the interest and question. Over 5 weeks ago I said that my condition had deteriorated over the past month. Looking back at things from the present, only my ability to watch TV and use the computer for over 20 minutes or on certain days has deteriorated. All of the other symptoms have remained stagnant and perhaps my ability to leave my room (walk around the house) has improved a little (although only a very small amount!)

I don’t believe the Nexavir is the reason for my aforementioned deteriorating symptoms (although I can’t be 100% sure.) My ME/CFS has almost uniformly progressed from when it began over 5 years ago and I believe that natural progression may be the culprit for my negative TV/computer related symptoms.

I have added to my protocol during the past 2 weeks; Kefir, Immunoplus, Catapult (containing Cat’s Claw) and magnesium injections and I am constantly trying new treatments hence it is occasionally hard to gauge what treatment is having what effect. Although having said that I seldom have had symptoms improve as a result of treatments and only once I have had a noticeable side effect (while taking T3.) GcMAF is something that I’ve been following closely for almost 18months now and I recently included it in a list of what I believe are 10 of the most effective treatments for ME/CFS: https://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/08/10-of-the-most-effective-treatments-for-cfs/

I will eventually try GcMAF although the question is when. The rumour is that it will be approved for import into Australia imminently which I am excited about. I have also enjoyed reading your comments on GcMAF at PR and I thank you for your contribution to the valuable thread about GcMAF.
Thanks again for your comment!

How you going on the Nexavir? I’ve been taking it for a couple of months now but mistakenly at tiny doses (.1 ml).

I’m now increasing the dose slowly to 2 ml. So far nothing to report from my end, no ups or downs. As always difficult to really know with all the other changes I’m making (detox/diet).

Be interested to hear your status with it. My intuition says LDN is the go but KDM doesn’t think much of it as they don’t know what it does (but do they know what any of this does?) and I’m surfing that particular Belgian wave for now.

I’ve just published five new posts on my blog, you may find them of interest. Hats of you to again my friend, your site is very well written and brilliantly researched.

Best.

Joe

Ps: Ever feel the pull to go completely natural in your approach? I like making people laugh by telling them I stick Pig liver in my butt every day, but honestly I’d rather a strong Chinese tasting tea any day….

@Joe,
Thanks for the comment on this blog entry and also my other blog entry :)

I’ve been on the Nexavir for almost 6 months now and will cease the injections in approximately 3 weeks time. I haven’t noticed any vivid effects from the Nexavir. For the first 4 months I injected 2mls daily however for the past 6 weeks I have been alternating 3ml and 1ml injections. I always inject the daily dose in the same place at the same time and I alternate between the left and right buttock daily. I wish you luck with your injections- I’d love to hear if they eventually have any effect on you.

Regarding LDN, Dr. KDM is someone whose opinion I value greatly and I view him as a prophet of sorts pertaining to ME/CFS. Several months ago I also read a secondary source (from memory) stating that Dr. KDM was ambivalent towards LDN due to its unknown effect on the immune system. As you mention, all ME/CFS treatments seem to be in the same basket in terms of the nuances of their effects and it is peculiar as to why Dr. KDM would distinguish LDN out from the set of all ME/CFS treatments. This ME/CFS patient (http://www.users.on.net/~julian.robinson/cfs/naltrexone.htm) has empirical evidence that LDN improved their immune status in at least some areas. The layered complexities of the immune system make gauging any treatments holistic effects on the immune system problematic. Having said that, I would be interested in knowing how LDN affects ME/CFS patient’s cytokine and chemokine levels. I would also be interested in knowing the basis for Dr. KDM’s remarks about LDN (including why he believes LDN is different to all other treatments.) Regardless of his uncertainty of LDN, Dr. Bihari has found that 50% of ME/CFS patients benefit from LDN (https://livingwithchronicfatiguesyndrome.wordpress.com/2010/02/26/low-dose-naltrexone-for-cfs/) I have been on LDN for 14 months and have found that my sleep has improved (my sleep quality worsens when I miss a dose.)

I loved reading you 5 new blog entries! We seem to be tackling this illness from similar angles. Wishing you all the best.

Hmmmm interesting to note your lack of success with Nexavir. Good idea to cut your losses and move on. Plently of other ‘medicines’ in the sea and your ass and wallet with thank you for it.

Great to hear the LDN has been of benefit. I looked in to Biharis work as a means to convince my doc to prescribe it off label. Haha it was like doing a sales pitch for investment. Looking forward to trying it soon. The same day I decided to give it a go my girlfriend at the time bought a t-shirt with the slogan I love LDN across the front. Love my synchronicities.

Glad you enjoyed the articles. I have another round in development so add your email to my subscription list as I can’t find it in my inbox and send out an update whenever there is a batch of new material (say every 3 months). And if its okay with you I plan on linking to a few of your own posts as well as adding you to my blog roll. Knowledge is power is health I say.

Check out the work of Niki Grattix a naturopath from the UK if you haven’t already. She takes a very holistic and specialised approach to it all and I respect that.

I’ll keep you posted on any breakthroughs. We’ll get there my friend, of that I am sure :)

I found after 6 months that I felt a tiny bit better. It was a very small step forward with noticeably better cognition, though small as I say.

I kept injecting daily, 2ml for 8 months then went to 2ml every second day which I’m still doing. In January this year I noticed a real difference so I’m glad I kept going with it.

I have generally better cognition and mental and physical stamina. It’s not every day but enough that I can go out more and last longer on my feet. The payback is less too. So for me at least, it’s worth it to keep going.

I’m new to the site–it’s great! I just started hepapressin injections last week. I was told they are virtually the same as kutapressin, which are no longer being manufactured here in the US. I’m a patient of Dr. Enlander. I started his oral protocol 5 weeks ago–Immunoprop, Immunoplus, electrolytes, B-12 spray, and Savella. Last week I started the hepapressin injections–10ml, once a week. I find it interesting how different this dose is from what you all have tried.

What I would like to know is how the hepapressin is manufactured. All I can find is that it’s an extract of bovine liver, but does anyone know what that means? Are the cows killed in this process? I consider myself to be vegan, or as close as possible, so it really bothers me to be using any sort of animal product, but I don’t know what else to do. I’d really appreciate any information you have on the manufacturing process of these injections.

@Rachael
Thanks for the comment :)
Hepapressin is virtually identical to Kutapressin and Nexavir in regards to mechanism of action. Although Kutapressin is no longer manufactured, Nexavir (which is basically the replacement of Kutapressin) is produced by Nexco Pharma.

I find it striking how the dose of our injections varies so greatly! Perhaps Dr. Enlander is using a quasi-pulsing structure or has found this dose to be optimal in relation to efficacy with his patients? Overall, a similar amount is being injected per week so maybe this is the only relevancy?

Regarding the manufacturing process of Hepapressin, I can only assume that it is the same as for Nexavir (despite the different species.) Nexavir (at the time Kutapressin) was originally made from South American pigs however Nexavir is now made from New Zealand and Australian pigs. The liver peptide in Nexavir is extracted from “approved abattoir porcine livers.” I can only assume that different parts of the pig are used for perhaps consumption and the removed liver is then utilised for the Nexavir. This is probably as opposed to the liver being consumed however the demand for liver consumption remains a constant hence other porcine are possibly killed. I am unsure as to the number of pigs’ livers that are required to produce Nexavir and morally this is probably the most pertinent question. The ‘peptide’ is the ingredient extracted from the porcine liver. Peptides are compounds comprising multiple amino acids and my lack of knowledge in the domain of chemistry means that I don’t know whether 1 pig would produce a huge or small amount of Nexavir.

I’m sorry that I can’t provide any clear answers regarding the production of Hepapressin (let alone Nexavir.) It may be worth emailing the company that produces Hepapressin to get some less nebulous answers.
All the best.

I have no idea what I have for sure but I ask for Kutapressin and I am given a generic bottle of liver extract of about 30 cc. I am deeply grateful for this. It is way less expensive than what I am reading people are paying. I get mine from a specialist clinic for Chronic Fatigue in Torrance, California. I have Chronic Fatigue Syndrome now for over 20 years. I have high viral loads and don’t take well to any immune stimulation. This is a life saver for me but I use it for skin lesions on my legs that appear very itchy so I don’t have to risk going on an IV to prevent complications of cellulitis. It can be used to treat skin conditions and it sure works. The only thing that works faster is Gamma Globulin shot but after my one shot for this condition on my legs, I am not allergic to it. I have varcous veins so my spots that itch like mosquito bites are on my lower legs. I am borderline diabetic as well with my brother having the same condition although he does not have Chronic Fatigue. I did a much longer trial of this extract but it did not seem to improve the fatigue. I am better than I used to be except for these tendencies for allergic reactions maybe in this case to a kind of food that brought this on. Without a dark field microscope, who knows what is really going on when this springs up on me but the liver extract will help and after about 10 days or so, I can stop till the next time which will be a long time maybe almost a year or two sometimes. Don’t ever pop this stuff in the refrigerator or its ruined. Likely you know that. Hopefully no one else did that to your prep while it was on the way to you. Best to you all.

Has anyone got Nexavir or Kunapressin covered by their insurance? If so,which type of insurance do you have? Which name was the drug going by?

I have insurance that is similar to medicare.They he denied me twice claiming that Nexavir is not FDA approved.

I contacted Nexaco asking about their FDA approval.They avoided my questions and mentioned that Kuntapressin was grandfathered into the FDA(it predates the FDA). Guessing the drug is currently not licensed to treat anything? Are they doing a disservice to patients by not getting FDA approval so no insurance will ever cover it? Why won’t they just get this drug approved?

Or is it our insurance that is doing us a disservice? Does it really make a difference that the drug changed names? Is the insurance company using this as a cop out to not pay for this expensive drug?

Expecting very sick people to have enough money to pay for this drug is crazy.How do we fight back? How do we make this treatment more available to more sick people? How do we get justice? We can’t just give up.

I scheduled a hearing with my health insurance.I’m working on finding a free lawyer for disabled people. Not sure if this a step in the right direction.

I hope I’m doing this right. I Just started nexavir/biopressin over a week ago and my fatigue has become so much worse I Just want to sleep all the time and can’t even watch tv for longer than an hour without wanting to sleep! JUst wondering if its the injections…

I used kutapressin about 15 years ago and at first it did not seem to do anything for me. It was only when I went to 4 ccs a day for 6 weeks that I saw a dramatic improvement.
I was going to give up because it was not helping my symptoms (fevers, swollen, painful lymph nodes, devestating fatigue) one bit, even at the 4 ccs. I kept at it because I happened to have insurance that was paying for it and a kind doctor who was writing prescriptions for it and at about the 6 week mark- Boom! Major improvement.
I kept taking it for months and months and never moved beyond that amount of improvement. However, some 15 years later, I have maintained most of the gains in health that the kutapressin brought about.
I have tried it since, even at high doses (4ccs instead of the recommended 2 ccs) and nada, nothing, zip.
I’d try it again, Dr. Cheney says you have to “pulse” immunomodulators- which I did NOT do- but I no longer have insurance that pays for it and it is so extremely expensive.

I have used Nexavir for periods of time over the years. It is the best medicine I could have for CFS and to fight viral activation. I would like to know where to purshase it at a lower cost. USA pharmacies are selling too high now is $250 and I cant afford it. My medical insurance has denied me the coverage. I am extremely fatigue and I need it . I have Epstein Bar virus and it is causing me many complications. Please if any of you know where to buy at a cheaper price post it. Thanks and may God help us all…

I have been on Nexavir/ Kutapressin off and on since 1994. When it was more reasonalbly priced in the 90’s , and i had a doctor that knew how to treat the CFS, and was taking a total of 8cc’s a week, 2cc’s in each hip twice a week along with a weekly B12, in about a year I went into full remission. However, having seen different providers since and not being able to obtain it for the years Swartz stopped making it, the fatigue came back with a vengeance and proceeded to develop into lupus. Even though the lupus it like CFS on steroids, the Nexavir helps with the fatigue. though it is now very expesive, credit it with my still being able to work, and have some quality of life

A few years ago also went to one of Dr. Teitlebaums clinics in Dallas a couple times when I was pretty much house bound, a restarted the nexavir along with his other protocol, including the IV’s
It perked me up to the point was able to go to a mall for the first time in 5 years,riding my horse again etc.. however the 1000 mile trip to Dallas, and the out of pocket costs – my insurance does not cover it,and even dropped me got to be prohibative, but if faced with the prospect of not being able to work or do anything it is worth the sacrifice
If you can find someone to prescribe it in your area, it is worth the sacrifice for the cost – figure a couple hundred dollars a month pays for itself in productivity and earnings – you can’t make any money curled up in bed.

A company called Bio-mer in New Zealand has been selling a 20ml vial for US$100. Although the site doesn’t mention Nexavir/Biopressin I have been buying from them for several years. They call it Biopressin now.

Hello from Europe,
KDM is sending now “4ME” , similar to Nexavir but from a Belgian laboratories. Worth about 90 euros the 10 vials, so that the cost of treatment per month would be about 270 euros, injected daily. Don´t Know how much is in dollars, but it is soo expensive. myself will begin shortly with subcutáneos injections .I don´t know if this can help me, after 7 years diagnosed with ME, now gave positive for Lyme and HHV-6.

It´s me again, five months later my previous comment and Nexavir treatment. My energy levels have improved by 40% minimum and my endurance. Also HHV6 values ​​have dropped and overall quality of life have recovered. The problem remains the cost very high. But for me at least, it’s working very well.

I am sorry that you have to spend so much, Snk. I wonder would it be worth it to fly in to the Holtorf Medical Group Clinic here in the Los Angeles area to get yours? Likely not but we pay around $87 for Liver Extract for 30 cc’s and the injections recently saved me a heavy round of antibiotics as it quelled completely a Phlebitis attack that had turned into cellulitis in my lower leg. Yes, it is painful to inject but I use the buttocks and put the needle in slowly and inject slowly. At least for me, this helps. So for me, the Liver extract is a life saver. I have CFS for over 25 years. I was fortunate to have used Rescue Remedy when I first got sick as I think that made a difference with better functionality. I have had a number of collapses, however and some for no reason and some for pushing too hard. I hope I can always get the Liver Extract and it will always be affordable for me. The Holtorf Clinic does not take health plans of any kind as I understand it.

Nexco has announced it has made its last batch of Nexavir, with an expiration date of April 2016.

As the blog and many posts mention, one alternative is hepapressin.

College Pharmacy in Colorado compounds what they call “liver extract” made from bovine liver. This is the hepapressin Dr. Derek Enlander uses in his cocktail and where he gets it. The price College quoted me in Aug. of this year was $33.08 per 10 mL vial, or $198 per month for a 2 mL/day supply (which does not include the necessary overnight shipping on ice and the cost of needles).

There may be a difference in concentrations. Nexavir advertises 25.5 mg liver derivative extract per mL. College pharmacy has not done a formal assay, but the pharmacist I spoke to there estimated about 22 mg/mL. (A possibly significant difference for people using 3–4 mL Nexavir per day.) Also, College’s hepapressin must be refrigerated and has a shelf life of 30 days. (Nexavir’s is 2 years, though I know of a senior pharmacist who is very familiar with Nexavir who think it is good considerably longer–for those who gamble.)

Another possible workaround is the oral “nutraceutical” Nexco will offer CFS patients as a Nexavir substitute. I don’t know what’s in it or what their testing has shown about efficacy. I hear Nexco will roll that out in the next 12 months or so. It will need a prescription but, I understand, will not be covered by insurance. The cost will be significant, about $450 per month for the dosage Nexco figures would replace a 2 mL/day dose of Nexavir.

From reading the posts here and from my (anecdotal) experience, the number of drug plans that cover Nexavir started small and has dwindled. In my experience, the hepapressin made by College Pharmacy is not covered (my understanding is that, in principle, nothing compounded is covered). I think an argument for coverage can be made based on the fact that its active ingredient is chemically and clinically identical to the more expensive Nexavir, which has been covered (not to imply that logic matters in these cases). Has anyone tested that argument?

Anyway, I intend to try. I’m unhappy that Nexco is discontinuing Nexavir; my insurance covered it. So far it’s been no miracle for me, but by increasing to daily use in combination with Valtrex, IM B12 and LDN over the long term (12 mos.) I’m no worse than I was last year–the first time in 5 years I can say that. And I know people whom it has helped dramatically.

I have a feeling that it could help a lot more people if insurance covered it, if only because more people could try it. But now we may never know.

Thank you for the great summary of the data. I’m sorry to hear that the Nexavir didin’t work for you. I just took my first shot an hour ago, and I feel all better. ;) Just kidding. I know that’s not how it works. I’ve been battling this disease for 12 years, but I still keep hoping for a magic bullet. I can say that the anecdotal reports about it hurting and bruising are true in my case. I self-administer B12 and gluthionine shots and they don’t hurt nearly as much as the liver extract shot just did. My extract comes from the Holtorf group in Torrance that another poster mentioned. If it makes a big difference, I’ll be back here to report on it. I’m supposed to take 2 cc’s every day divided into two shots. But I’m going to start with one shot a day of 1 cc since it’s so painful and see if that makes a difference.
By the way, here’s some things that make a real difference for me:

–lots of fresh green, red, orange, and yellow vegetables and no processed foods or sugar
–Dr. Wilson’s Adrenal Rebuilder Formula (not the “adrenal support”–that’s ok too but didn’t make a difference for me)
–B12 shots once a week
–occasional red meat (I didn’t eat meat before CFS, but found I need some now and then since contracting it)
–LDN
–Ambien
–meditation
–a good multivitamin–I use “RAW” by Food for life. (HInt: if you don’t notice some improvement in energy and well being after taking it for a few days vs. taking nothing, then it isn’t a good multivitamin.)
–Vitamin C–1000mg or more spread out through the day. Vitamin C is the only pill–drug or vitamin–that makes an immediate difference, within 20 minutes, when I take it. It’s pretty magical stuff.
–Vitamin D 10,000 IU a day.
–If you are able, take some moderate exercise. I think walking is awesome exercise. Also, I can still swim and even lift weights sometimes but at half the level or less than I did pre-CFS.

From all this, it seems clear to me that even the experts in the field are like Captain Kirk saying “best guess, Mr. Sulu” when trying to shoot Khan out of the stars. What a helluva thing.

Thank you, David, for sharing your protocol and everyone else who has posted with very helpful information. I could never take any kind of adrenal support without severe consequences. You need a medal for taking the “Raw” but I see its the capsules and not the drink. It is good for you though. I take Throne Basic Nutrients V as a vitamin but alternate it with a bunch of vitamins I am using up as it has no iron or iodine both of which somehow go wrong for me if I get those. I am currently taking Thorne Glutathione-SR twice a day as I cannot afford the IV’s and am able to walk some and work out at the gym with mostly the treadmill and the Precor EFX Cross Trainer. I cannot use Elliptical trainers without exhaustion perhaps some muscle groups are effected. I had to start out very s-l-o-w-l-y. I use heparin every few days or I have shortness of breath. I try not to get discouraged for what has become a way of life for so long with good days and days with less energy.